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Fibromyalgia and work

Posted , 4 users are following.

ChronicGirl
ChronicGirl

I just wanted to start by thanking those of you who took the time to read long post!

For just over two years I have struggled with various symptoms. I won't bore you with the huge list but the main ones are flu like body aches, knee/hip/back/ shoulder/neck/jaw pain, migraines, restless legs and debilitating exhaustion.

Despite many complaints to my GP that something was obviously very wrong it has only recently he referred me to a rheumatologist. He believes I have chronic pain (due to an ankle injury), fibromyalgia and possible chronic fatigue.

I'd previously been very fit and healthy. I had a full time job which I loved. I was looking forward to starting a family.

Now I feel lost and broken. I still have my job but I'm taking so much time off I'm worried I will be fired.

How do you cope? How do you live with these illnesses?

Any advice would be gratefully received.

V xxx

1 like, 4 replies

4 Replies

  • kaz_40
    kaz_40 ChronicGirl

    Posted

    Hi chronicgirl Living with a chronic illness isnt easy, as you know. The way I try and cope with fibro chronic fatique and my other illnessess is I just take each day as it comes I cant take med for pain so use wheat bags and a hot water bottle for pain relief. stressing worrying doesnt help our symptoms it only makes them worse. easier said than done not to stress worry. take your mind off hwo your feeling dont focus on fibro distra\ct yourself. whether its reading watching tele listening to music. I try to ignore fibro like it doesnt exist. just plod as best I can. I find treating our selves and being kind to to ourselves helps. having our hair done a pamper day. anything to help make life more bearable. help support and aids also help us are invaluable to  us having a good gp helps.  see what your gp can offer in the way of pain relief and what support is out their for you. some areas have fibro support groups. most gps can refer you for cbt therapy to a pain clinic. some areas off free acupuncture for 12 weeks and free hydrotherapy for so many weeks. everything with fibro is trial error you will find what works for you and what doesnt. fibro affects us all differently so what works for 1 wount for another. it also differs with each every one how it affects us. some people can be at the extreme level level of fibro others may have it mild. we are all different fibro treats us all different. as for work many have had to give up work because of fibro, some people have had the sack because of fibro and having to take time off work. those that do work are struggling as some bossess are making their lives hell when their having to take time off work. here in the uk you can try claiming esa and pip. They arnt always easy to get you have to go through assessments fill forms in etc its not guareenteed you will get them, its a nightmare trying to get the much needed help support we need. As Ive found out personally Ive just been left to get on with it. so I sort myself out and deal with it as best I can its not easy. like you I feel broken in two. find what works for you  and get as much help support as you can. you will get support advice off this forum take care x
    • ChronicGirl
      ChronicGirl kaz_40

      Posted

      Thank you kaz40. I'm sorry you suffer with these awful illnesses to.

      I'm so shocked having never used the NHS for anything major before that people can just be left to deal with such an horrendous illness when they desperately need help in order to carry on living some semblance of a normal life.

      I feel like a shadow of myself just trying to make it through each day rather than actually living.

      I've been given 4 different types of medication in the past and none suited me. Like yourself I use heat pads.

      I'm thinking of cutting down my hours at work although I will struggle financially. The industry I work in isn't very understanding and it takes a lot a mental stamina to do my job. I don't see I have any other option.

      Wishing you strength, soft hugs

      V xxx

  • Bee70
    Bee70 ChronicGirl

    Posted

    Hi ChronicGirl

    Yeah, it's not easy living with Fibro.....after living with pains for over 20yrs....Since being diagnosed with Fibro Aug 2014....the few things that are working for me are....

    CBT ( Cognitive Behaviour Therapy) 

    Herbal Remedies (If you need further info on this message me privately)

    Positive attitude and keeping away from STRESS !!

    Dealing with one day and moment at a time.....

    I work 6hrs a day Mon-Fri.....office based job. These hrs increased by one hr per day only July 2015.  I am doing better now than I have been over 20yrs regarding the pains.

    Take care and sending you POSITIVE gentle hugs from ME to YOU....wink xx

  • abot24558
    abot24558 ChronicGirl

    Posted

    I tried working, selling real estate, for a few years. Finally, I had to give up. (I'd been caught in a person's bathroom for 1/2 an hour!  Graudally, over the years, I've become less active. Eventually, I retired. I'm 75 now, enough work. Fortunately, I had a good sleep specialist who started me on Xyrem, about ten years ago. Since getting good sleep, finally, I have less pain and am more active again. We must get good sleep, it's crucial. That and good pain meds, that really work.
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